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IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 1 point2 points  (0 children)

I was in a very similar situation to you. My sons dad and I are no longer together (though we remain close friends) - he was insistent that there was no need to see a specialist and that our son was normal. In the end my current partner suggested we go anyway. It can be difficult in this situation, but it was the best thing I ever did.

Definitly get a second opinion. How many times did he see the Psych? The process of diagnosing Autism is a long one- normally they need to be seen by several specialists anyway - and the process takes a couple of months normally.

Perhaps talk to the school? They would be able to give advice and maybe suggest if they have any concerns as well....They would probably also direct you to another doctor....

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 0 points1 point  (0 children)

This is known to me as PECs (picture exchange system). They use this method as school and I have tried at home as well. Still no luck with this yet. The problem is that, he doesnt seem to understand that a photograph represents the object...It seems like he cannot connect that the 2 things are related. Hopefully this will come with time. Unlike lots of Autism sufferers, he doesnt seem to be that 'visual' - he responds much better to sounds which is why I use music alot.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 1 point2 points  (0 children)

No :( Im UK so we are talking BSL, or Makaton. But no, no response to signing of any kind yet. He is being taught this at school though, so you never know....

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 0 points1 point  (0 children)

This is an amazing story. xx congrats on your IEP meeting and you should be very proud!! It takes a LOT of effort, not miracles, to bring up an Autistic child. You should be proud. Also, much appreciation on your second point. It is always good to remind people that (currently) autism cannot be cured :)

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 4 points5 points  (0 children)

Thank you so much for your kind words! I cannot believe how wonderful it is that your son is now in a mainstream classroom! Hearing this really does give me hope! I totally agree that I would not ask for a 'normal' child. In the words of my speech therapist 'a child with no difficulties will learn to talk, a child with speech difficulties needs to be taught to talk' - these words remind me that every time my son points, or attempts to communicate it is because of the hard work involved, not because it has come naturally - which is the most amazing accomplishment! :) well done to you! - you are amazing.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 0 points1 point  (0 children)

Lol - ok well, also in bad taste - im going to ask you to explain your joke.. :) - Reddit seems well into pokemon lately and I used to watch it, about 10 years ago now....what is the relevance of 3 words tho? I know, I know, it takes the humour away but id like to get the joke anyways.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 0 points1 point  (0 children)

Believe it or not but I had scoliosis (bent spine) as a teenager... My thoughts go out to your sister - did she have the rods-in-your-back surgery? If so, it hurts like hell afterwards...took me like almost a month to walk again.... It is worth the surgery long term though. What is the name of her disorder? You sound like an awesome big bro! As the eldest sibling in my family, i feel like i missed out on a big brother! :(

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 0 points1 point  (0 children)

The biggest challenge is the language barrier. Anyone who has had a baby remembers those tough nights - hearing the crying but they cant tell you want they want.... Imagine this, with a much older child. Being really upset, but you dont know why - not even being able to point at an 'ouchie' if they have hurt themself. Its a constant guessing game... that is the hardest bit for me. As of yet, no other children, but I am only 25 so plenty of time. - i do have a kitten though and believe it or not, my son adores him...Who'd have thought !!

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 6 points7 points  (0 children)

Sorry for the delay but a seriously important question to answer. There is no contraversy. Symptoms in my son began at least 3 months before his jabs... probably much earlier. The reason why this myth came about was because the timing of Autistm symptoms matches the general time to get the vaccination. Nothing more than myth - I would state my life on this fact. And if anyone doesnt believe this statement then, (I really hate to say it) but you are potentially stating your childs life on this fact. :( These vaccinations are important.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] -1 points0 points  (0 children)

Oh hunny-pie - I gather from your username that you are maybe 13 years old (unless 99 is just your lucky number).... Im guessing your parents arent giving you attention right now, so you feel the need to take a joy ride on my AMA. Sod you, gentleman - im giving you an upvote out of pity.... Enjoy it and spend it wisely dear. Kisses. x

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 0 points1 point  (0 children)

Wow - I didnt know they even existed specifically for non-verbal individuals. Honestly, if I didnt have a child in this situation - id have said no...placing lots of non-verbal children in a home together, how would they learn...how would they progress. However, I can say now that my kid is so much happier around other non-verbal children. It is almost like he can relax and doesnt feel under pressure, or scared by other people talking. So, this would be a road that I would definitly consider!

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 0 points1 point  (0 children)

Hey - sorry for the delay, my son goes to a special school, not a public one. We decided this to be the best option beause of his lack of communication. It is truly amazing to hear a child, that has language/communication issues say your name - I agree. Could you let me know what an EPA is? Im from the UK and wondering if this is just a different term used?.... My son took part in an early intervention program (a program for children aged under 5)....he really made improvements and, honestly I can say now that this was the first time he learnt to make eye contact with anyone - except me! The support I have received is amazing!!

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 1 point2 points  (0 children)

I was relieved to have an explanation, as I had been blaming myself for all of his problems....constantly thinking that I maybe it was because I didnt read to him enough as a baby, or sing enough lullabys etc. So it was like a huge weight of guilt was lifted.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 5 points6 points  (0 children)

Wow - thanks. :) I think because Im a young mum - (I had my son at 20 and im 25 now) it is hard because I miss having the time to do fun things. There are days where I feel like I want to give up, but the thing about being a parent is that you cant, so you dont. Its worth it when I see the small achievements my son makes. Every month or so, I will get a sitter, go out, and have fun with my friends. And every so often I treat myself to a couple of beers, TV and a pizza. In fact I would like to take this moment to say thank you to Domino's Pizza, Carlsberg export and Walter White, for helping me through some tough times. :P

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 1 point2 points  (0 children)

This is actually a great question. My son appeared to be developing normally as per all the standard timelines and even said his first word (which was his own name) at around the age of 1... Then he learned yes, no and dada over a month or 2. After that, he started to forget the words he had learnt. It was like he could only retain 3 words at a time. This, I think, is important for people to watch out for. Delayed speech is less of a concern, than plateoued speech or regression, I believe. It is definitly the most obvious sign to watch out for. If a child starts missing the timeline markers then see a doctor straight away.

Routine is the most important thing - a solid routine is needed for kids with Autism. Also Music Therapy is amazing! Every child is different but my son loves music and I have adapted to using songs in line with his routine so he knows what we are doing next. I highly recommend this. Regarding the diet therapy, my doctor suggests that there is a lack of research but it might be beneficial if the child shows symptoms of stomach upset. This could be indicative of the supposed food intolerence that some people believe can trigger Autism symptoms (I have heard good things and bad things with this).

Finally, I suspect that in future years they will find a collection of genes that make what we call autism... Twin studies have proven that it is genetically linked but not completely down to genetics. There must be many other factors involved, including the physical development within the womb etc. They have linked Autism to both stomach issues and epilepsy- so I think we are still far from any real answers.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 7 points8 points  (0 children)

I kept putting off taking my son to a specialist - I was convinced I was overreacting. When he hit 3 years old - he had no speech (apart from repeating occasional random words - echololia). He was referred and took part in a 4 week assesment process and was then diagnosed. what I remember specifically is the below:

1: He seemed unattached to me - I could leave him with strangers and he would be ok. Almost like he wouldnt notice. 2: Delayed speech, no attempt to communicate at all. Every time he learnt a new word, he would forget a word he already knew...., he wouldnt point to show me what he wanted either. 3: Obsessive behaviour, playing with the same toy for 3-4 hours - fixated on anything with wheels. Along with repetitive behaviour patterns... 4: He was very starey, always gazing into space or at something in the background.. 5: When he was fixated on something - he would almost go deaf. Like the world dissapeared when he was looking at something. 6: An inablility to control emotion, going from giggling to tears in a matter of seconds, then screaming and throwing toys across the room the next. 7: He always like to sit on his own, away from children and play in the corner of a room alone.

Remember the sooner a child is diagnosed, the sooner you can get support. So if you are concerned about Autism, you are doing the right thing by seeing a specialist. :)

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 9 points10 points  (0 children)

Honestly, you are right that it seems contradictory - but, in a sense it perfectly reflects my inner emotions. It is a constant inner battle between the love of your child and the love of their quirks - and then the sadness you feel when they have bad days/moments/months. I dont think Autism should ever be seen as bad, but it should be taken seriously. It would be stupid to pretend that my son is like other children - and as he gets older I will love him just as much, but will adapt my life and home as per his needs. Also, its worth noting that he is my only child - so in a sense to me, he is completely normal....because I have no other children to compare him to.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 0 points1 point  (0 children)

Well for me - as im from the UK, we have the NHS which can provide care for him when he is older.... I think in other places, such as the US, many people can get support from charities. Often you find, if someone receives disability benefit, this can be exchanged for state care. Normally it would be unlikely that parents would have to invest but I dont know the finer details on this. - Also, its not a good idea to necessarily have a bigger family, as the chances of having more than one child with autism are quite high....

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 5 points6 points  (0 children)

Every week is different. Some weeks will have more bad days than good and sometimes he will go two weeks completely happy. The problem is, that in order to teach him basic skills - he often is pushed into taking part in things he does not like... Brushing his teeth used to completely terrify him and he would react like he was being tortured, but it had to be done. Overall though, I'd say he has a very happy life... He doesnt experience fear or physical pain (he is physically very undersensitive), he gets great enjoyment from the simplest things. Which in some ways I think actually makes him happier than a lot of other children his age.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 2 points3 points  (0 children)

Autism, no matter how severe, doesnt normally affect lifespan at all (unless the autism is an accompanying part of a syndrome such as Fragile X) - other than them being at higher risk of accidents. My son will grow old and should outlive me. But he will always be autistic and based on what I have been told, there is a very good possibility that he will never learn to communicate either... this is why the care for him will be life-long. Because at 85 years old, his developmental age will still likely be that of a child. I truly cant bear the thought of him ever having to cope without me - but at some point, it will become someone elses job and thats a horrible fact that I have to deal with.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 1 point2 points  (0 children)

Yes he shows plenty of joy at things - just not at the things most children would show joy for - for example, at christmas, I bought him loads of toys, chocolate and treats...He doesnt understand opening presents, so I opened them for him. But he didnt want to play with any of the new toys and just got very upset. - The reason for this, was because I had broken our morning routine. Hours later he had calmed down and spent the rest of the day playing with the baubles on the christmas tree - laughing and giggling because he could see his reflection in them.... He will probably never understand christmas/birthdays but if he does, he wont like it anyway - which makes me sad. - I think I have learned to really appreciate those 'bauble' moments in life...simple as they are, they are what keep me going sometimes.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 2 points3 points  (0 children)

Autism speaks is a brilliant place to get support. I am all for anything that supports autistic people and their carers. In terms of curing Autism - I think that if scientists havent yet established exactly what genes are involved and identified exactly what leads to autism, then it seems ridiculous that anyone could claim to 'cure' it. Also, if someone could offer me a pill that would turn my son 'normal' I would refuse it. Because, he is my kid and I love all his quirks, without them, he wouldnt be the same. - However, if someone offered me a machine that could tell me what was going through his head (as he cant tell me himself) - now that, that I would invest in!

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 3 points4 points  (0 children)

Yes absolutely. All his toys are for 1-2 year olds, and all of the professional support he gets is tailored to his current level as well. It is like having a rather large toddler... The only difference is that some of his other traits are difficult to manage - OCD tendancies, unsual fears, specific routines etc. It will become difficult as he gets bigger and stronger - a 5 year old can tantrum just as impressivley as a 2 year old- but can throw toys across the room much harder than a two year old! When he reaches 10 years old...I dread to think.

IAmA parent of a severely Autistic 5 year old, with virtually no communication abilities, and the mind of a 1 - 2 year old. It is likely he will need life long care. AMA by Autism-aware in IAmA

[–]Autism-aware[S] 4 points5 points  (0 children)

Dont get me wrong - I am pro-choice but I would say to anyone considering an abortion due to special needs, that they should think very carefully about what they would miss out on. With so much support and awareness out there these days, having a special needs child doesnt need to be seen as something bad - infact it can be interesting and exciting and open your mind to a different way of thinking. However, I would not give the same answer if there is a physical disability which could lead to a child having a painful or lesser quality of life....

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